Update June 8, 2023

 It’s only been two weeks since the last update, but i am trying to do these more often, and there are a few things i wanted to get out there right away. Although i’ll still start this one with an apology, a lot of you sent me direct messages after the last update and i have not gotten to all of those yet. When i’m under this much stress, my communication skills are often the first to go.

The day after i posted the last update, Amanda started having a lot of bleeding from the nose and mouth, which was difficult to manage. The first time her mouth started bleeding, it lasted for over 3 hours before she could get it under control. She also had been sleeping 20 hours a day, and vomited once or twice a day for the next week or more. We contacted her oncologist twice to ask if what she’s going through is normal, or if i should take her to the hospital. He told us that, unfortunately, everything she’s going through is known side effects of the carbotaxol, and she’ll just have to ride it out. He suggested a few things for me to pick up over the counter, to help with the bleeding and dehydration, so i did.

She started having trouble even eating macaroni and oatmeal, so we were down to just applesauce, jello, and popsicles for a while there. Difficult to do anything with so little fuel in the body.

The vomiting finally tapered off earlier this week, and we thought she was done with that, although it did happen again today. It’s curious, even though the vomiting usually happens almost immediately after eating and taking her meds, it’s been predominantly liquid, with very little trace of the food she just ate, and her pills have not come up in any of it. So i guess that’s a plus.

We had a phone appointment with the oncologist on Tuesday. Unfortunately, she was rejected from the study which i mentioned in the last post, the super-Kisqali-type medication that we hoped she would react to well, since regular Kisqali was so good to her for so long. Apparently, at this stage of the clinical trials, they’re looking for patients who have never received chemo, so she was ineligible.

I did mention that there was a backup to the backup, though, and fortunately, they wasted no time getting that to us. It was hand-delivered to our front door the next morning, and she’s already started the new medication.

We asked him again about all the sleeping, bleeding, vomiting, and eating aversions, and he again assured us that yes, it’s normal for these side effects to persist, even this far out from treatment. We can expect this to continue for another two weeks yet.

I do have positive news though. Yesterday, she was feeling a bit stronger. She was able to eat a bowl of cereal for breakfast and a fistful of spaghetti for lunch and again for dinner, keeping it all down. She only slept 16 hours yesterday. She’s feeling more alert and cognizant.

Today, she woke up early, and she wanted to go to the gym. So we did that.

The gym is about 500 feet away from our place. We had to stop and take a break about a quarter of the way there, but she was able to walk all the way down. She planned to sit on the recumbent bike and pedal very slowly for as long as she could, but by the time we got there, her legs were exhausted. So she sat on one of the weight machines and very slowly lifted 10 pounds, five reps, fifteen sets, over the course of an hour.

Afterward, we went to Costco. She ate half a hot dog and a couple bites of pizza, and drove the motorized shopping cart around while i filled it with groceries.

We stopped at CVS and picked up some prescriptions, including yet another new medication.

That wiped her out for the day, she’s been sleeping since we got home at 1:00. But that’s an incredible improvement over just a couple days ago. So i’m gonna call this update a net positive.